Category Archives: representations

Gender, health, and societal obligation

Kate Harding, writing at Broadsheet:

“If you ask us,” say Glamour editor Cindi Leive and Arianna Huffington, “the next feminist issue is sleep.” Personally, I never would have thought to ask those two what the next feminist issue is, but they make a pretty good case. “Americans are increasingly sleep-deprived, and the sleepiest people are, you guessed it, women. Single working women and working moms with young kids are especially drowsy: They tend to clock in an hour and a half shy of the roughly 7.5-hour minimum the human body needs to function happily and healthfully.” The negative effects of chronic sleep deprivation are well-documented, but that doesn’t inspire enough people to prioritize rest, and women often end up in a vicious cycle of sacrificing sleep in order to do extra work and make sure their domestic duties are fulfilled, causing all of the above to suffer. “Work decisions, relationship challenges, any life situation that requires you to know your own mind — they all require the judgment, problem-solving and creativity that only a rested brain is capable of and are all handled best when you bring to them the creativity and judgment that are enhanced by sleep.”

So many obligations are heaped on the shoulders of women, and it is pretty much impossible to fulfill all of them even if you completely neglect your own needs. Of course, trying to tend to your own needs means even fewer of those obligations fulfilled, and there are cries and admonishment of selfishness and failure and responsibility to others waiting for you should you assert your right to self-care, because by asserting the right to take time and energy exclusively for yourself, you are stealing time and energy that belongs to others.

Sleep is a contested act in American society (perhaps in others too, but I can only speak to the US): getting little of it becomes a point of pride; getting a lot of it is a symbol of laziness, selfishness, sloth, dirtiness, carelessness. People are expected to perform amazing tasks on as little sleep as possible, which is completely counterintuitive, because most people are going to perform worse with insufficient sleep — consider it a generalized manifestation of the supercrip phenomenon: exactly the people who are least supported/enabled to do something are the ones who are expected to do it better than normal people.

Better sleep would surely benefit many of us, but why?

According to Leive and Huffington, the main benefits realized are in service of others; the main beneficiaries are the people around you. Or, if you see the benefits, they are benefits that stem from an obligation to others, any self-benefit remaining firmly subordinate to the “greater good” of one’s family, colleagues and community members.

We should be well familiar with the concept of women as public property. Women’s bodies, women’s time, women’s possessions, women’s decisionmaking capacity, women’s self-determination — just about anything a woman possesses, though she doesn’t really possess. Rather, she is allowed use of something that is under her care but not her ownership: it belongs instead to the people around her.

Feminists are familiar with the idea that our society considers female reproductive organs to be public property. A woman’s vagina should be available for all comers (men), and simultaneously be unavailable so as not to waste its value to its eventual sole owner (a man). A woman’s uterus is to be used for the good of the human species/civilized society: the right kind of women are to reproduce as much as possible, so that their kind remain the dominant group in both pure numbers and in overall power. (On the other hand, the other kinds of women are called upon to perform the rough, menial work necessary to uphold modern society, while not polluting the human species by reproducing themselves.)

But honestly, public ownership of women extends so much further than their reproductive systems.

No woman is allowed to assume ownership of any part her physical self, her time or purpose: it is still an “indulgence” for a woman to eat anything more substantial than a leaf of lettuce, still “sinful” to enjoy less than 100 calories of overprocessed puddings and crackers. It is still somehow selfish to take a long bath or to sit and rest for an hour’s time, still slothful to refrain from moving, working, pushing, rushing every single moment of every day.

Women’s work, in general, is under-valued and un(der)paid — and it is uncompensated precisely because women’s time, their energy, their effort, do not actually belong to the women themselves, but rather to the rest of the world. It is theirs to use whenever, however, and however much they wish, and isn’t it ridiculous to suggest they should pay for the use of something that belongs to them in the first place?

This is all part and parcel of living in a patriarchy, a predictable result when society relies upon a person’s gender to determine hir position in society, the things sie will do, the roles sie will play, the direction hir life will take. But gender is not the only variant in play here. In fact, I believe that gender is actually secondary here to another factor — it is merely one avenue of manifestation for our cultural construction of health.

Surely you have heard of the theory that gender is not an inherent trait, but a performance. This theory is definitely not without flaws, but I bring it up in hopes that it provides a familiar framework for a discussion on the social construction of health.

Health, you see, is not merely an inherent trait. Health, instead, emcompasses a variety of factors, including a person’s intrinsic qualities but also the environment in which they operate and their everyday behaviors.

Health is not just what a person is. Health is also what a person does. And what drives a person to do something is not wholly internal, but rather is largely influenced by external factors.

Gender, for instance, is both an internal sense of being and something we do for other people, something we do because we want other people to think about us, react to us, in certain ways. And the things we do, and the expected reactions to them, are different depending on which culture we are operating in — dependent on where we live, on our ethnicity, on our class background, on any number of other things. What it means to wear certain types of clothing is different in different cultures. What it means to speak a certain way is different in different cultures. And so on.

This framework is — I hope — useful for understanding what health actually is.

The form “health” takes is different depending on the expectations of the culture you live in.

The ultimate importance of that so-defined “health” is different depending on the expectations of the culture you live in.

The role “health” plays in the culture, what “health” means in that culture, the way the people of that culture interact or engage with that idea of “health,” are different depending on the expectations of the culture you live in.

What you do to achieve “health” is different depending on the expectations of the culture you live in.

How your health affects your position in life, your economic opportunities, the support that is offered for you to live the kind of life you desire, are all different depending on the expectations of the culture you live in.

(And yes, all of this is just as true in a culture that makes use of the scientific method and sees itself as cool and rational. What is investigated, and how, and how the results are interpreted, and what lessons are drawn from those results, and how those lessons are applied in everyday life — all these things must grow out of the culture they happen in! )

Health, then, is not merely a personal state, but rather a cultural fulfillment. Health (of whatever kind) is expected of you, expected by the people around you. Your health is not your own, but instead belongs to your family, your community and your wider culture. You must achieve and maintain (whatever kind of) health, not because it benefits you personally, but because you will have deeply failed your fellow members of society if you don’t.

And this is what underlies the problematic aspect of Leive and Huffington’s statements. They are not suggesting that the sleep deficit for women is a problem because the woman herself feels fatigue or cognitive dysfunction. They are suggesting that the sleep deficit for women is a problem because the woman cannot fulfill the expectations of health — and the performance of duties that rely on that state of health — that society has for her. They are suggesting that the sleep deficit for women is a problem because then that woman personally fails her family, community and country.

Here, then, her lack of sleep lays bare her duty to society based on particular qualities she holds. But the disparity between her duty and her male peer’s duty would not exist if all of us did not have a duty to society to achieve and maintain a certain kind of health.

And Leive and Huffington, purporting to be advocating on women’s behalf, do nothing but reinforce the same system that screws women disproportionately when they center a woman’s obligations to the people around her over the personal experience of the woman herself.

And here, I hope, feminists will understand what disability activists mean when we talk about the supposed obligation of mentally ill people to submit to (certain kinds of) treatment for the sake of the rest of society — or what fat acceptance activists mean when we talk about the supposed obligation of all people to be as thin as possible for the sake of the rest of society — and so on.

Eating “healthy” (as determined by mainstream cultural wisdom, largely controlled by wealthy white temporarily-abled folk) is not done solely for oneself. Neither is “exercise” (of course, what counts as physical-activity-that-improves-health is controlled by the same people who control what counts as food-that-improves-health). Participation in the paid workforce is not done solely for oneself — we are, in part, fulfilling the obligation of “responsibility” (which is a component of the health performance, because when health is lacking, the ability to work declines — so work, then, is a demonstration that you are fulfilling your health obligation).

When a person neglects to fill a health-related obligation, there is someone there to remind them of the cost to the rest of society. We’ve all heard figures on the cost of obesity, the cost of heart problems, the cost of low employment rates, the cost of suboptimal nutrition, the cost of insufficient sexual education, the cost of lost sleep… wait, that sounds familiar. Anyway, the cost might be in dollar figures, might be in time lost, might be in persons participating in x activity, or might be more intangible: work decisions, relationship challenges, judgment, problem-solving, creativity… wait a second, didn’t we just hear that? Oh yeah.

And that’s what’s wrong with this angle. Ladies, you are hurting your families! You are failing your communities! You’re dragging all of society down with you! When all you have to do is get an extra hour of sleep — seriously, how selfish are you, staying up to get the dishes clean after your kids have gone to bed so that they’ll have clean bowls to eat cereal out of in the morning?

Except that the entire reason women are getting less sleep than they need is because they’re busy fulfilling their obligations to the rest of the world. The entire reason women are getting less sleep than they need is because they’re required to be well enough to handle multiple shifts, every single day, for their entire adult lives. The entire reason women are getting less sleep than they need is because they’re required to get up at stupid o’clock every morning to handle all the things they’re required to do before going to work (including the obligations to project an image of “health” — to look and smell fresh and clean, to be sufficiently hair-free, to wear attractive clothing, to possibly spend time putting on a face full of makeup and making her hair look presentable — all which are wrapped up in appearing healthy to the people around you), and when they get home from work they still have to do the laundry and make the dinner and wash the dishes and pick up the floor and wipe down the kitchen and bathroom counters and possibly wrangle kids or partners all the while —

— and then they are getting chided by self-proclaimed women’s advocates because they spend too much time doing things for other people, and not enough time doing things for oneself… for… other people…

And it’s impossible to separate the demands of womanhood from the demands of ability. It’s difficult to differentiate the hierarchy of value imposed on people of different genders from the hierarchy of value imposed on people of differing abilities.

I’m sure you get, by now, how women get completely and utterly screwed in this situation. But I invite you to imagine, then, how disabled people get completely and utterly screwed by this situation — and then I invite you to imagine how a system that did not value people differently due to their differing abilities would also remove a lot of the pressure that is currently dumped on women.

A system of equal access, opportunity, value, for people of all types of abilities, would be radically better for people currently oppressed under this gender-based system.

And when you reinforce the ability-based system of oppression, you make things worse for the women living under it.

… just sayin’.

(Cross-posted at three rivers fog.)

Dear Imprudence: Oh No, It’s the Pronunciation Police!

The following appeared in Slate’s “Dear Prudence” advice column chat-room supplement fairly recently:

Chicago: We have a close friend who is prone to embarrassing malapropisms that surpass even the best Norm Crosby bit. These are not innocent and simple mispronunciations—but ugly mangling of words including misuse and lack of understanding of the meaning of some words. I know that many words have multiple pronunciations and meanings, but this is beyond brutal. Some of them are funny, some are faux pas that make you wince and want to help. We used to try to help by repeating the word correctly in conversation after she had mangled it. No success. We have tried the direct approach—like a teacher—but this was rebuffed. We never did any of this in public but in private, away from others. And we picked our spots—only bringing up the worst cases. But she takes offense and continues mispronouncing words and inserting them in conversation where they don’t belong. Recently, my wife used the word adept, and now our friend mispronounces it and uses it like apt. It is like she has her own language. My wife has stopped trying to correct her. Her husband is no help and does the same thing on a smaller scale. I refuse to throw in the towel as I can’t understand why anyone would not want to expand their vocabulary—correctly. I would want to know if I was saying tenor for tenure and FOIL-AGE for any of the many accepted versions of foliage. We are 57 and of sound mind. She does not have a hearing problem.

There are so many problems here, I don’t even know where to begin. This “friend” is SO EMBARRASSING, nor does she take kindly to being corrected by her “well-meaning” pals who think her misuse of language is just terrible! Horrors!

One part that strikes me as uniquely troubling is this: “We are 57 and sound of mind.” Yes, because being 57 is supposed to automatically mean that one becomes not sound-of-mind? Soundness of mind, additionally, is one of those things where the meaning changes depending upon whom you talk to. Combined with the letter-writer’s utterly condescending attitude toward his “friend,” this sounds suspiciously like a trope that has been leveled for ages at PWDs, mostly by the temporarily abled who are so concerned about their welfare: If you’d just take my advice/listen to me/let me HELP you, you would get better. As has been proven time and time again, this is rarely true.

Now let’s look at the columnist’s response:

Emily Yoffe: Your friend probably has some sort of language processing disorder (there was speculation that the George Bush’s malapropisms, “I know you want to put food on your family,” etc., might have come from such a disorder), and all the schoolmarmish corrections in the world won’t “cure” her. It’s good you mention Norm Crosby, because he built an entire career on amusingly mangling language. I don’t know why you consider being with your friend “brutal.” It sounds as if you usually understand what she means, and when you don’t, you can ask for more context. Trying to keep a straight face seems like the biggest problem you face in socializing with her. So just be compassionate and let it go, and when you get in the car, you can laugh at her best neologisms.

Shockingly, I don’t totally hate this advice, despite Yoffe’s ill-fated attempts at snark/humor. She brings up an excellent point: If these “well-meaning” grammar cops think that being around this person (whom they call a friend) is such a trial, then why would they continue to be around this individual? To bolster their own sense of superiority? To show off their class privilege to this “friend” in the most ridiculous way possible? I have some issues with the “just laugh at her when she’s not around” suggestion, which seems almost needlessly rude–laughing at someone’s disability, furthermore, (which they often cannot control) is generally considered impolite for a reason.

But what the hell do I know? I’m just a person with several disabilities; if I’m lucky, perhaps a well-meaning TAB is writing a hand-wringing, oh-so-concerned letter to an advice columnist about me right this very second.

Talking down disability while talking down to young people

Contains spoilers for A Darkling Plain, so be warned!

I’ve just finished up Philip Reeve’s Hungry Cities books. They’re really good, and I’d recommend them to any young adults reading, or anyone else who is into YA. Mortal Engines, Predator’s Gold, Infernal Devices and A Darkling Plain are full of complex female characters in a well-realised world, engaging with lots of ethical meatiness. The story is essentially about a future time in which there are mobile cities that move around finding smaller cities to “eat” for resources. Anti-Tractionists, meanwhile, live in static settlements and fight against the Municipal Darwinists. I have a few problems with the books, but I’ll keep it brief and address the rather irritating disability fail that starts off in Infernal Devices and runs through A Darkling Plain.

General Naga is the head of the Green Storm, which is the dominant Anti-Tractionist force for a good portion of the series. He has sustained war injuries and now an exoskeleton-type device allows him to move around. It’s emphasised that he’s a good and honourable man, gracious to all and working for peace. Well, up until he thinks Lady Naga has been working for the other side, at which point he is violent towards her, imprisons her and turns back to war. Almost inevitably, there is disability fail. To focus on the last book, (because that contains most of the references to General Naga, and because that’s the only one I have to hand!) alarm bells were ringing for me on page 35. Here is what goes through the mind of young Anti-Tractionist Theo Ngoni as he converses with General Naga’s wife, Lady Naga (aka Dr Oenone Zero):

‘He had seen Naga; a fierce warrior who clanked around inside a motorized metal exoskeleton to compensate for his lost right arm and crippled legs. He could not imagine that Dr Zero had been in love with him. It must have been fear, or lust for power, that had made her say yes.’

At this point, I thought, of course not. It’s going to turn out that she really loves him and married him for who he is, and this is just to set up breaking down that perception of unlovableness, right? Wrong. ‘She did not love him. She was just grateful for his protection, and glad that the leadership of the Great Storm had passed into the hands of a decent man. That was why she had been unable to say no when he asked her to be his wife.’ Naturally, a woman marrying for security. Part of my mind says that plays into the complexity of the relationships in these books, and it’s good to read something written for young people in which the happily ever afters aren’t really. Another part is thinking about how this sort of thing happens over and over again in popular culture, you know, where a disabled character isn’t being loved despite their being disabled or something.

And it goes on much like that, really, with lots of references to the crippled man! with his unrequited love! and he’s ‘half a man, wrapped up in clanking armour,’ according to one character, did we mention?

General Naga sacrifices himself in the end for the greater good, which frees young, unblemished Lady Naga from her horrid situation (tripping the sarcasm detector there). This “the cripple must die” dynamic that comes up so much in popular culture is really troubling, because its prevalence is just another betrayal of the societal view that disability is totes the worst thing ever and how can you live like that and why won’t you die and stop messing up my pretty world?! At the same time, he dies a hero, saving the people of London, following an illustrious career. Which is not exactly nice, but something.

What stories like this do is assume an abled readership. At least, I hope so, because consciously putting all this stuff onto young disabled people is a bit much. If a good part of writing fantasy/SF/spec for young people is to assist them in escaping and building up their imaginations and experiences, where are disabled youth to live out fantasy lives? Disabled youth are quite as deserving of an imaginative playground in which to develop their minds and thought as anyone else. In fact, I think it’s particularly vital that people so marginalised in the world be given opportunities to work at rich internal lives. What stories like this do is present full worlds and characters, contrasted with a bundle of cliches making up the one stock disabled character, and in doing so put disabled readers in their place: not deserving of anything more than that, and aren’t you glad you got represented at all? (Hello Doctor Who!) Which is not to mention that one dimensional characters represent another way of talking down to younger people. Younger people are quite capable of relating to characters outside of tired stock character types.

And at the end of the day, I find that these representations take me out of a story and just distract me. It’s poor storytelling, often inconsistent with the quality of the writing otherwise. It’s insulting to the audience, disabled and abled, young and old and in between.

[Cross-posted at Zero at the Bone]

Some Thoughts on The Time Traveler’s Wife

This post contains spoilers for the book and the film.

The other day I went to see the film version of my favourite book, Audrey Niffenegger’s The Time Traveler’s Wife. I was expecting a more gooey version of the book, and was a little apprehensive about the treatment of disability, but I wasn’t expecting what I got.

The time traveller of the title, Henry, travels due to a genetic condition called Chrono-Impairment. He experiences this as inconvenient and unpleasant: he is pulled out of his daily life and often to quite painful times in his past.

In the book, part of the way Henry convinces geneticist Dr Kendrick that his time travelling is real by giving the latter information about his son, who is soon to be born. One of these details is that the son, Colin, has Down Syndrome. And just about everything said about him is along the lines of what Henry says just after the birth: ‘I’m sorry about Colin. But you know, he’s really a wonderful boy.’ Dr Kendrick’s reaction to his son’s ‘abnormality’ is less pleasant.

But Colin doesn’t appear in the film. There’s a part of my mind that was glad we missed what would surely be a nasty mix of okay and fail. But with his exclusion, we also missed the presence of half the disabled characters in the novel. And I know you have to make changes for film adaptations, and that’s fine. Though it’s curious how all the queer characters and most of the non-white characters were taken out for the film version, too… (Which is, again, good on the one hand because you miss all the painful stereotypes, but bad on the other as, you know, there are few non-white or queer people.)

But I said half the disabled characters, so let’s address the other one: Henry.

In the book, Henry gets hypothermia when he ends up time travelling to a park in winter. He loses his feet and spends the rest of the novel in bed, then in a wheelchair. In the film, only one of Henry’s legs is affected, and he keeps it. Both Henry and Dr Kendrick emphasise that he’s not going to be in the wheelchair for long, If it had just been Henry saying that, I would have thought, okay, that’s a reference to his knowledge about his premature death. But as Dr Kendrick says the same, and as Henry never stops using the wheelchair until his death, there’s no point in saying it at all. Except to reassure the viewers that Henry is not one of “those people” and this is just a temporarily blip, that is. It’s okay, everyone, don’t panic; Henry isn’t disabled.

Henry learns about his upcoming death (oh, time travel) not long before getting hypothermia. I am not a fan of the emotional line formed here; to me the emotional message, if not the letter of the thing, is that disability is a stage in dying, that disability is a kind of pre-death. Which, come on. Henry isn’t dying up until he is killed. In the book at least the particular importance of Henry’s needing to be able to run is explained (it has often been a matter of survival when he is thrust about in time) (though it actually isn’t in any of his travels following the loss of his feet). In the film, we just have abled to disabled to dead. It leaves a bad taste in my mouth.

But what I found most strange in the discrepancy between the book and the film was Henry’s attitude. In the book, Henry is largely miserable once he loses his legs. In the film, Henry is a Good Cripple. It’s a pretty big contrast, and again the film takes out emotional complexity and loses the opportunity to highlight the marginal.

But now we come back to Henry’s time travel, and here we hit some more complexities. Can we call our chrono-impaired hero disabled? Within the world of the text(s), Henry doesn’t appear to treat it as such, as best I can recall from both texts. But irrespective of whether Henry or those around him understand him as disabled, as viewers and readers we can draw out a fair few messages about disability. There are all sorts of nebulous ideas in my head on time travel as impairment, and Henry’s search for a cure, and the issues with Clare and Henry having a baby. To be honest, I haven’t settled my feelings on this. But here are some ideas in Time Traveler’s that slot into popular ideas about disability…

  • Let’s make it a super power!
  • Long suffering partner
  • Should we have a kid with this condition? Or would that be unfair?

… and some of the difficulties Henry faces…

  • His impairment isn’t known about or dealt with in everyday society and he has to keep it a secret. In fact, he is scared for his job. Scary invisible disability?
  • He is repeatedly arrested because of a lack of understanding of his condition.
  • He struggles to find appropriate medical care.

What else can you think of?

So the novel and the film versions of The Time Traveler’s Wife have problems in different respects. But I’m finding the differences between the novel and the film the most interesting of all.

I’d Rather Be Dead

I didn’t think I’d need to do this but it has come up: This post is not a place to discuss the merits of assisted suicide. Many disabled people, including me, find it really unsettling. In the context of able-bodied and neurotypical people telling us our lives aren’t worth living it is especially inappropriate. Comments on the subject will not be published.

Warning: The following includes graphic descriptions of medical unpleasantries.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I have a chronic pain condition. Most of the time I don’t bother getting into detail because I don’t feel like it but it’s illustrative here, so I’ll share. I live in pain. It pools in my hips and my left knee and my right shoulder and sometimes my legs turn to stone. Every step I walk hurts and I keep getting slower and more labored. (My disability is invisible only in the most technical sense. Fortunately people have lots of practice not seeing disability! So, phew.) Sometimes, like the other night, my hands hurt so much I can’t get the non-child-resistant easy-open top off the bottle of pain meds.

(If my hands hurt so much why do I type? Why not use a voice writer? Because this voice here, this is the voice I write with. This is not the voice I speak with. I would write far less if I had to use my voice to do it. And it’s only pain.)

And then there’s the Weird Shit. (It’s a technical term.) I take antibiotics daily because if I don’t I get a urinary tract infection which leaves me crumpled in the bathtub screaming, gushing blood, graying out, waiting for the big antibiotics to get working. Sure I could go to the emergency room and I have — where they give me the same antibiotics I’d get from calling my urologist’s answering service and pain meds weaker than what I take daily. And I get to deal with having medical professionals react to me being trans* and poor.

A sore throat once turned out to be a fungal infection, another one was a tonsillary abscess, the treatment for which was getting stabbed with a large-bore needle then having the contents of the abcess squished out. It was about as comfortable as it sounds, and it tasted every bit as good. I did not bite the nurse practitioner who was treating me. My general practitioner later looked at me really weird when I expressed concern that my next sore throat (it was just a virus and a runny nose) might be one of these until I explained that I’d actually had these things.

The big one was when a cold — in the space of three weeks — became bronchitis, then pneumonia. If I rolled onto my right side, I felt like I was drowning. If I sat up, I felt dizzy. A chest x-ray showed much of my left lung was wrong. I was admitted to hospital that day, the five doctors that came that night took my wife into the hall and told her the things that could be killing me. There was fluid in the space around my lung. They poked at me and stuck a needle in and drew off three hundred millilitres. I didn’t get appreciably better. They installed a peripherally introduced central catheter so they could give me vein-killing antibiotics like vancomycin and aureomycin. The fluid they’d drawn off, cultured, proved to be sterile. More chest x-rays showed shadowy bits around my heart and more imaging showed fluid buildup there too — between having a lung and a third to breathe with and a heart working under the increased burden, I was understandably tired. Even more understandably when some time during the week I was in hospital, my red blood cell count fell through the floor. They were tracking everything that came out of me so it wasn’t like the blood was going anywhere, it just… vanished. They gave me more blood. Later they got the bright idea of drawing off the fluid around my lung at least and took me down to radiological medicine. I got to sit up for it. They did throw in some lidocaine, which at the time I hadn’t figured out that I could say “Hey I don’t metabolize this like most people I need more time for it to take effect before you start stabbing me with shit” so the ginormous fucking needle they stabbed me in the back with? I felt most of that. Ow. I wasn’t supposed to see it (mustn’t discomfit the patient, even if she finds things comforting that most people don’t), but I got a look at the three-litre vacuum bottle half full of murky green fluid they’d sucked out of me. I felt much better, though that lung felt crinkly like cellophane from having been collapsed so long. It was a teaching hospital, so the place was crawling with med students who all (I heard — the nurses wouldn’t actually let them come near my room for which I am still grateful) made excuses to come read my chart. I was medically interesting. I never did get a diagnosis. A real diagnosis, I mean. I know full well that ‘idiopathic pericarditis’ means ‘the membrane around your heart is inflamed and we don’t know why.’

On a fun side note, while I was in hospital busy being sick with Weird Shit I kept getting calls from work. I was the only person in the company who knew how to do what I did, so I provided user support. From my hospital bed. On morphine, with blood running into my arm. It was kind of impressive, in an appalling way. When I was home (I was out of work almost two months and none of it was remotely vacational — at some point I’ll write about having had a whole week of vacation in the ten years since my diagnosis with this chronic pain condition) they sent someone to bring me a computer so I could do some things, occasionally.

I’ll stop with the Ways Kaninchen Zero Is Very Very Ill now. The point is yeah, there’s a lot going on. Most of us could tell similar stories, or scarier ones.

I cry, often. Even with the meds I’m in a lot of pain all the time. I’m exhausted, all the time. I work thirty to forty hours a week in spite of it (though I’m running up against the limits of that too).

People who don’t live with chronic pain wonder how I do this. How do I live with this much pain? How do I keep going? How have I done this since I was a teenager? (I’m thirty-seven now.) I must be a fucking paragon of moral fortitude, because (I’m told) I’m not even all that bitter about it (though I am, sometimes). I’m happy, when I can get around the depression I’ve carried most of my life too.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I hear this a lot. It’s actually not a secret, though I think the able-bodied are somewhat afraid of the answers. It’s not even difficult. Most anyone could live my life, probably. I have a good life. My doctors listen to me when I tell them what’s going on with me which is wonderful after so many years of being told I wasn’t in pain because the tests didn’t show anything. I have books, games, computers. Because of the last I have friends and I fall in love about five times a year. (I’ve been working on doing things that scare me and I’m telling people more that I’m infatuated, crushing, in love. And that they don’t have to feel the same way about me at all.) Sometimes I can actually stop writing a story and call it finished.[1]

Here’s how I do it: I want to live. I don’t want to be dead. My life is worth living. It’s not tragic. It’s easy. We’ve all got the means to get acclimated to a new home, new furniture, changes in climate and environment. Having a different bodily environment or neurological environment is just something else to get used to.

The commenters in the Why Are They So Angry At Her? thread have it right, I think. The physio/neurotypical haven’t bothered to consider our lives from any perspective but their own and all they see are limits. They imagine being ill with the flu (which leaves me in bed and miserable and hating it too), or an injury that hurt and impaired their movement but ultimately healed: a sprained joint, a broken bone. (All of which I’ve done also: counting the events where more than one bone broke at a time as one, I’ve broken bones more than ten times though I’m a little fuzzy on exactly how many — broken toes are hard to track.) They recall how miserable being ill or injured was and imagine having a disability (or several) as being ill or injured and thus miserable all the time.

We’re not. Even when depression is part of a constellation of symptoms or a side effect of meds or just something else to live with, we’re not. We’re just living, like everyone. When we hear “I’d rather be dead” it often sounds like “you should be dead.” And with good reason. People with disabilities are killed by those who should care for them. Parents kill their disabled children and the public’s sympathy is with the murderers. Caregivers in institutional facilities kill residents and few people care.

Amanda has written extensively about this at Ballastexistenz, and her Background, to the Foreground post is excellent. Not Dead Yet is dedicated to working against euthanasia and assisted suicide policies that make killing us legal, or at least fuzzy. Lauredhel’s post at Hoyden About Town about Christian Rossiter’s lawsuit to refuse nutrition hits most of the points I try to make when I talk about this issue. It’s despair and isolation that drive us to want to die. The neuro/physiotypical don’t see that part of it.

There are social feedback loops that reinforce these attitudes and keep us isolated. Ignorance and fear and hate go together. Neuro/physiotypical friends and relatives stop inviting us to things after a while. We’ve said we can’t come a number of times: we weren’t up to it for whatever reason that day, the venue wasn’t accessible, we didn’t have transportation. Eventually it becomes habit, justified by unhelpful concern. Whatever place isn’t accessible (it’s too much bother to plan for real utility). Oh, they probably won’t feel up to it (our lives are miseries anyway). Around it goes.

[1] Some of my stories can be found at my story blog, though be warned: nearly all of them involve themes of sex, violence, death, horror.

Quiz: Representations of Disabled Bodies in Logos

disabledlogo

Most disability logos just consist of the usual stick-figure-in-the-wheelchair logo, or a derivation thereof.

After spotting this logo for No Barriers No Borders, I went looking for others. And I got to thinking about the representations of disabled bodies in logos.

row of variously-dressed smiling cartoon people under NBNB banner, standing, sitting in wheelchair, with cane or crutches

I set aside those images dealing with sport, and those not including any representation of a PWD’s whole body. Here are a few typical samples of what I was left with. I haven’t cherry-picked; I mostly just grabbed from the first few pages of a Google Images search.

My question to you is:

What do all of these logos have in common?

Continue reading Quiz: Representations of Disabled Bodies in Logos